Services for Foetal Alcohol Spectrum Disorders

Sandra Butcher made this Rhyddid Gwybodaeth request to East Suffolk and North Essex NHS Foundation Trust as part of a batch sent to 24 authorities

This request has been closed to new correspondence from the public body. Contact us if you think it ought be re-opened.

Roedd y cais yn llwyddiannus.

Dear East Suffolk and North Essex NHS Foundation Trust,

I am writing as a volunteer researcher for the National Organisation for Foetal Alcohol Syndrome-UK (www.nofas-uk.org) to make a request for information under the Freedom of Information Act. I am working in cooperation with an ad hoc group of leaders from the organisation and other experts to frame and shape this research project and to analyse the information we receive.

Background

In February 2017, Lord Boateng asked the government “what assessment they have made of the measures adopted in Scotand which provide guidance and support for children and young adults affected by foetal alcohol spectrum disorders.” Lord O’Shaughnessy replied that “Early intervention services can help reduce some of the effects of Foetal Alcohol Spectrum Disorders (FASD) and prevent some of the secondary disabilities that result. Responsibility for commissioning these services lies with clinical commissioning groups. [Hansard, Written Question HL5052, 10 February 2017. https://www.parliament.uk/business/publi...

This government policy was reiterated in July 2017 when Lord Campbell-Savours asked the government “what support they are providing for persons whose condition has been described as foetal alcohol spectrum disorder.” [Hansard, Written Question HL500 and Written Answer, 18 July 2017, https://www.parliament.uk/business/publi... In response, Lord O’Shaughnessy for the government wrote that “It is recognised that Foetal Alcohol Spectrum Disorders (FASD) can have a significant impact on the early development of children, their behaviours and their life chances. Early intervention services can help reduce some of the effects of FASD and prevent some of the secondary disabilities that result. Responsibility for commissioning these services lies with clinical commissioning groups.” This was again repeated on 8 May 2018 by Steve Brine, Parliamentary Under-secretary at the Department of Health and Social Care. [Hansard, Written Question 139045, 8 May 2018. https://www.parliament.uk/business/publi...

The following conditions fall under the Foetal Alcohol Spectrum Disorder (FASD) umbrella: Foetal Alcohol Syndrome (FAS), Alcohol-Related Neurodevelopmental Disorder (ARND), Alcohol-Related Birth Defects (ARBD), Foetal Alcohol Effects (FAE) and partial Foetal Alcohol Syndrome (pFAS)) or neurodevelopmental disorders linked to prenatal alcohol exposure (NDPAE)

Request for Information

In light of the above information I would like to ask you to provide:
1) Copies of any policies that the Trust has on the prevention of FASD, and on the diagnosis and post-diagnostic care pathway for patients with an FASD. Also your policy on the training of Trust personnel to manage patients with FASD.
2) Any information you hold on services your Trust provided for FASD for
a. prevention education following the 2016 Chief Medical Officers’ guidelines that the safest course is not to drink while pregnant or attempting to become pregnant;
b. diagnosis for both children and adults;
c. post-diagnostic care in the financial years beginning 2013, 2014, 2015, 2016, 2017 and 2018.
3) Information on the number of Doctors in your Trust who currently provide diagnostic and/or post-diagnostic services for FASD? Please provide their names and posts. Whether your Trust employs specifically trained professionals, including but not limited to nurses, psychologists, occupational therapists and speech and language therapists, to provide specialised services for patients on the FASD spectrum? If so, in what specialties, and how many? Please provide their names and posts.
4) Information on training provided to personnel in your Trust on FASD, or provided by others and accessed by your personnel.
5) Information you hold on whether your Trust sends patients for FASD diagnosis to the National FASD Clinic in Surrey (https://www.fasdclinic.com/)? Did your refer any patients to the National FASD Clinic in 2013, 2014, 2015, 2016 and 2017, and in 2018, and if so, how many in each year?
6) What was your budget for services for FASD in each financial year since that starting in 2013 and including the current financial year?
7) Please provide copies of any agreed plans you have to expand the budget or services in coming years.
If you are considering rejecting this request on the grounds of the costs of responding exceeding the statutory limits then please respond to as many of the numbered items as possible within the limit, in the order they have been presented.

Yours faithfully,

Martin Butcher

FOI Requests CGH, East Suffolk and North Essex NHS Foundation Trust

Dear Martin,

 

I am writing to acknowledge receipt of your request under the Freedom of
Information Act 2000 to East Suffolk and North Essex Foundation Trust
(ESNEFT), received on 23/07/2018. Your enquiry has been logged and
forwarded to the appropriate department for action. Please note that the
Act allows 20 full working days to provide a response, although we will
endeavour to do so before then. The deadline is calculated to be
20/08/2018.

 

If you have any queries regarding your request, please do not hesitate to
contact me on this email address or 01206 745205.

 

Regards,

 

Freedom of Information Team

East Suffolk and North Essex NHS Foundation Trust

 

dangos adrannau a ddyfynnir

FOI Requests CGH, East Suffolk and North Essex NHS Foundation Trust

1 Atodiad

  • Attachment

    Management of Women with Alcohol Problems in Pregnancy Guideline v3.0.pdf

    184K Download View as HTML

Thank you for your recent enquiry regarding information held by the East
Suffolk and North Essex NHS Foundation Trust.

 

Your enquiry has been dealt with in accordance with the Trust’s Freedom of
Information Act 2000 Policy and Procedures. We are pleased to enclose the
information you requested:

 

This response is on behalf of Ipswich Hospital site

 

1)                  Copies of any policies that the Trust has on the
prevention of FASD, and on the diagnosis and post-diagnostic care pathway
for patients with an FASD. Also your policy on the training of Trust
personnel to manage patients with FASD.

Please find attached the guideline for the management of women with
alcohol problems in pregnancy and babies born with FASD for Ipswich.

2)                  Your policy on the training of Trust personnel to
manage patients with FASD.

The Paediatric Community Service manages FASD patients. This service is
run by West Suffolk Hospital, who can be contacted via the following
email: [1][email address]

3)                  Any information you hold on services your Trust
provided for FASD for

a)       prevention education following the 2016 Chief Medical Officers’
guidelines that the safest course is not to drink while pregnant or
attempting to become pregnant;

This advice is provided for pregnant women around alcohol consumption

·         Women should be advised to abstain from alcohol during
pregnancy. There are no safe levels of alcohol consumption during
pregnancy and this must to be made very clear to women.

·         Many babies are affected by fetal alcohol spectrum disorder when
they have only been exposed to very small quantities of alcohol in utero.

·         Alcohol is damaging to the baby throughout pregnancy, and
affects the brain cells and other structural development.

b)      diagnosis for both children and adults;

c)       post-diagnostic care in the financial years beginning 2013, 2014,
2015, 2016, 2017 and 2018.

We would not record activity in Trust systems by diagnosis, therefore
could not answer this question as we could not identify the children
affected unless we reviewed every baby born since 2013.

4)                  Information on the number of Doctors in your Trust who
currently provide diagnostic and/or post-diagnostic services for FASD?
Please provide their names and posts. Whether your Trust employs
specifically trained professionals, including but not limited to nurses,
psychologists, occupational therapists and speech and language therapists,
to provide specialised services for patients on the FASD spectrum? If so,
in what specialties, and how many? Please provide their names and posts.

The Paediatric Community Service manages FASD patients. This service is
run by West Suffolk Hospital, who can be contacted via the following
email: [2][email address]

5)                  Information on training provided to personnel in your
Trust on FASD, or provided by others and accessed by your personnel.

The Paediatric Community Service manages FASD patients. This service is
run by West Suffolk Hospital, who can be contacted via the following
email: [3][email address]

6)                  Information you hold on whether your Trust sends
patients for FASD diagnosis to the National FASD Clinic in Surrey
([4]https://www.fasdclinic.com/)? Did your refer any patients to the
National FASD Clinic in 2013, 2014, 2015, 2016 and 2017, and in 2018, and
if so, how many in each year?

The Paediatric Community Service manages of FASD patients. This service is
run by West Suffolk Hospital, who can be contacted via the following
email: [5][email address]

7)                  What was your budget for services for FASD in each
financial year since that starting in 2013 and including the current
financial year?

There is no specific budget for FASD services at Ipswich.

8)                  Please provide copies of any agreed plans you have to
expand the budget or services in coming years.

There are no plans to create or expand a budget for FASD services at
Ipswich.

 

This response is on behalf of Colchester Hospital site

 

1)                  Copies of any policies that the Trust has on the
prevention of FASD, and on the diagnosis and post-diagnostic care pathway
for patients with an FASD. Also your policy on the training of Trust
personnel to manage patients with FASD.

There is not a written policy/guideline for FASD diagnosis/management. The
referral pathway would be to refer to the community paediatric team +/-
clinical genetics team +/- tertiary paediatric neurology.  

2)                  Your policy on the training of Trust personnel to
manage patients with FASD.

We do not have a written policy/guideline for training staff to manage
patients with foetal alcohol spectrum disorder.

3)                  Any information you hold on services your Trust
provided for FASD for

a)       prevention education following the 2016 Chief Medical Officers’
guidelines that the safest course is not to drink while pregnant or
attempting to become pregnant;

Information not held

b)      diagnosis for both children and adults;

Information not held – we are in the process of developing a diagnostic
register

c)       post-diagnostic care in the financial years beginning 2013, 2014,
2015, 2016, 2017 and 2018.

Information not held

4)                  Information on the number of Doctors in your Trust who
currently provide diagnostic and/or post-diagnostic services for FASD?
Please provide their names and posts. Whether your Trust employs
specifically trained professionals, including but not limited to nurses,
psychologists, occupational therapists and speech and language therapists,
to provide specialised services for patients on the FASD spectrum? If so,
in what specialties, and how many? Please provide their names and posts.

The children’s community team can diagnose FASD if a patient meets the
criteria but we would usually seek advice from clinical genetics first.
Anyone in the community team could, in theory, make this diagnosis
although we are not specifically trained other than our general community
medical training.

5)                  Information on training provided to personnel in your
Trust on FASD, or provided by others and accessed by your personnel.

We do not have specific focused specialist training on foetal alcohol
spectrum disorder in either the acute or community paediatric setting,
other than that which is covered by the RCPCH curriculum.  

6)                  Information you hold on whether your Trust sends
patients for FASD diagnosis to the National FASD Clinic in Surrey
([6]https://www.fasdclinic.com/)? Did your refer any patients to the
National FASD Clinic in 2013, 2014, 2015, 2016 and 2017, and in 2018, and
if so, how many in each year?

We do not have any recorded referrals to this specialist clinic.

7)                  What was your budget for services for FASD in each
financial year since that starting in 2013 and including the current
financial year?

There is no specific budget for FASD services at Colchester

8)                  Please provide copies of any agreed plans you have to
expand the budget or services in coming years.

There are no plans to create or expand a budget for FASD services at
Colchester.

 

If you have any queries about the enclosed information please contact us,

 

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We hope that we have been able to answer your query to your satisfaction
and that you find the information provided useful.

 

Regards,

 

Amy Witham

Information Governance Administrative Assistant

East Suffolk and North Essex NHS Foundation Trust

Based at: Ipswich Hospital NHS Trust

Email: [8][email address]

 

References

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4. https://www.fasdclinic.com/
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6. https://www.fasdclinic.com/
7. http://www.ico.org.uk/
8. mailto:[email address]